A week with my alter-ego

Most of my blog posts have a positive spin to them and most of the time I appear to be in good spirits despite my somewhat precarious health. And the thing is, most of the time I really am positive and I really am in good spirits. It’s not a front. Of course I have darker moments, and of course the times when I am extra sick are extra hard, but for the most part, in the words of a friend from high school,  I am “high on life.”

Last Friday night I felt kind of irritated. On Saturday I was full on grumpy. Actually I was more than just grumpy. I was agitated and short-tempered and I felt like I was just waiting for the day to be over. I didn’t want to do anything – I begrudgingly worked on a crochet order, I put away a partially completed jigsaw puzzle, I stopped watching a movie because I was too frustrated to fast forward commercials and I started and stopped three different books. Sunday was no different. Well actually, it was worse. Sunday was like Saturday except that I had to practice crazy self control to not snap at everyone around me (and even still I wasn’t always successful…sorry to my family on the other end of my irritated replies). This carried over to Monday, except that Monday was worse still. On Monday I burst into tears on three or four occasions for basically no reason at all. At least no good reason. And no, I don’t consider waiting on the phone while the receptionist at my specialist’s office had a hard time finding me an appointment a good reason. Trust me, I know how pathetic this all sounds.

Not even Ellen DeGeneres could make me smile. Oh, and I wanted to swear just all the time! Anyone who knows me knows how unusual that is.

We all have off days, myself included, but this was very uncharacteristic for me, especially three days in a row. I had turned into a completely different person overnight. It was as if someone had a flipped a switch and out came this alternate universe version of myself.

I forgot to mention something… last Wednesday I started a new medication, and not just any medication, but an anti-psychotic. This particular anti-psychotic has had success in preventing nausea and vomiting during chemotherapy, so I was prescribed it off label to try to reduce nausea and increase appetite. It’s hard to know for sure because things change daily and good days and bad days come and go, but I do think it helped with my nausea a little.

Except it made me miserable.

And the thing is, I would rather be sick but happy than a little less sick but sad.

At an appointment with my family doctor on Tuesday we decided that this was perhaps not the medication for me. She explained that when needed, anti-psychotics and anti-depressants can work wonders, but when used off label some people prove to be really sensitive to even the lowest dose, which is what I was taking (The good news here – my reaction proved that I’m not psychotic. Hey, I’ll take a win where I can!). This is not the first time I’ve had an adverse reaction to a low dose “guinea pig” medication, but I keep filling new prescriptions with the hope that it will be the key to turning things around.

I’ve been off this medication for several days now and my personality and good spirits have finally returned. I no longer have to bite my tongue and keep from rolling my eyes anytime someone talks to me. Ellen DeGeneres is once again amusing me. The switch has been reset and alternate universe me has gone into hiding for the time being. I was really symptomatic yesterday, but I was also happy.

This last week with my alter-ego has been a huge eye opener. It’s not always easy, and I’ve had to really work at it over the last year, but I feel incredibly thankful that most of the time I am able to just accept the bad things as they come and focus on the positives instead. I realized just how important my good spirits are to my ability to cope and how when I feel like I have no control over my body I still have control over my attitude. Losing that control was scary and lonely and sad.

What a great reminder how important it is to give everyone the benefit of the doubt. We can’t see what is going on inside someone’s mind. Tragic events, stress, medications, physical illness, mental illness, these things change us. And yes, sometimes we can control our reactions and adjust to whatever is going on in our life, but that takes time. We’ve all been the ones who are too quick to lose patience, who snap without precedent, and who just can’t muster the energy to be polite and friendly. And we all know how nice it is when other people are patient with us and forgive our poor behavior. So doesn’t it make sense, then, to give other people a break now and again?

Most of the time it’s not personal. Most of the time we’re all just dealing with our own lives and our own problems. Sometimes it takes us a little bit longer to figure it all out. And that’s okay.

So to anyone reading this who is having a bad day, is feeling overwhelmed, or is feeling like you just don’t want to be nice to anyone, I know how you feel. And I truly hope that you find a little joy today, that something makes you smile, or that someone shows you a little extra understanding.

And to anyone reading this who is having a good day, is feeling content, or is feeling like you just want to smile at everyone, do it! Why not be that person to spread joy, share the smile and exercise a little understanding?

If I’ve learned anything during my week with my alter-ego it’s that these little things really can make all the difference.



Fun at the pharmacy

Yesterday my granulation tissue faced off with silver nitrate for the seventh time. The nurse was very liberal in its application and based on the severe stinging I experienced for the next 8 hours, I thought that the granulation tissue had finally been defeated! Alas, when I took a peek today I couldn’t even tell it had been burnt. Granulation Tissue: 7, Silver Nitrate: 0.

Soon after this discovery my doctor’s office called and wanted to know which pharmacy I went to so that they could call in a prescription for me. I saw my doctor on Tuesday and we didn’t discuss any new prescriptions so I was thoroughly confused. I asked what the prescription was for but the office assistant didn’t seem to know, so I gave the location and phone number of my pharmacy (which I happen to know by heart…I thought this was a bit sad until this knowledge helped out a fellow ER patient!) and hung up. About an hour later I called the pharmacy and asked them what it was all about.

Apparently I had been prescribed a topical antibiotic. This was such great timing seeing as the silver nitrate is clearly not effective when it comes to treating my oh-so-stubborn granulation tissue. Off to the pharmacy!

Let me just say that I have the utmost respect for the pharmacists at the Shoppers Drug Mart I go to. In the last six months alone, between my NJ tube and its complications, my J-tube and its complications, and the day to day maintenance of my gastroparesis and associated symptoms, I have been prescribed 16 different things. This doesn’t include over the counter medications. I don’t take all these meds at once! However, I am a regular at the pharmacy. The pharmacists have always been thorough in providing me with any necessary information about potential drug interactions. Over the years I have asked them advice about side effects, vitamins, vaccinations, etc. and I consider them an instrumental part of my health care team.

Since my surgery two months ago, I haven’t actually been in to pick up any prescriptions (thanks, mom!), but when I approached the counter today I was warmly greeted by name. The pharmacist asked me how I was doing and said “Wow! You are looking so much better!” Not only that, but she addressed all my concerns about putting an antibiotic around my stoma and even got some information from an intimidatingly thick book.

It may seem a bit silly, but I was so touched by this interaction! It made me realize two things…one, I must have looked really awful a few months ago…and two, I have cheerleaders in the most unlikely places. She was genuinely pleased to see me out and about and happy to see that I’m no longer starving to death. I sincerely thanked her for all her help and left the store feeling well taken care of.

And then I started thinking about all my cheerleaders out there and I was overwhelmed with gratitude. To my family and friends who continue to check in with me, to my mom’s students who pray for me every morning, to the grade three family at my mom’s school who brought me muffins the other day, to my doctor who was thinking about me two days after I was in to see her, to all those people who filled our freezer with dinners while I was in the hospital, to my gastroparesis girls across the U.S. who have sent me cards…thank you! There are so many people who have reached out to me and offered support to my family throughout this journey, and even though I can’t list you all here, I am truly grateful.

Cheerleaders can show up in the most unlikely places. The pharmacist today lifted my spirits more than she probably realizes; the fun part was that her support was so unexpected. Now I want to be that unexpected cheerleader for others as often as I can. I think we all know how much of a difference a smile, a greeting, an email, a card, a phone call, or anything else like that, can make when we are on the receiving end. What would happen if we took that cheerful spirit and passed it along? What would happen if we filled ourselves with the spirit of those behind us, those supporting us, and used it to fill the spirits of those in front of us, those who need an extra lift? I think we’d all feel a little lighter. I think we’d all stand a little taller.

I think it’s worth a try. After all, good posture never hurt anyone!